New To This Board

[angelsea]

I've been reading many of the posts after joining yesterday and am impressed with all the experience and knowledge here.

I can't even remember exactly how I became interested in celiac disease (which I HAD heard of many years ago) and gluten sensitivity but began doing some research on the internet and even purchased a couple of books and became increasingly convinced of the possibility. I haven't been having the "classic" symptoms but over the past several years have been having a more bloated belly all the time (gettting tired of people asking me when my baby is due!) with various other complaints on and off, like reflux and lots of heartburn. My energy level is about the lowest it's ever been, and I'm extrememely irritable. I'm having a very difficult time concentrating on typing this at the moment, but that may have more to do with not being able to handle the noise level in the room with my 8 yo son and my husband arguing over whether to watch baseball or a Three Stooges tape while my son plays his own version of indoor baseball (he has Asperger's Syndrome, which is a disorder on the Autism Spectrum, and he is very high functioning, but has various developmental delays, mostly emotional).

I finally resolved to make an appointment with a gastroenterologist and found one that accepts my insurance, which does not require a referral. When I called the office of the one I chose, they took my information and asked who referred me (myself) and the name of my PCP and said someone would call me back. Two weeks went by with no return call and I tried again after experiencing a couple of days of greater stomach discomfort, but got a busy signal. I gave up and dialed my PCP and made an appointment, which was this past Monday (10/3 -- exactly two years since my son's original dx with Pervasive Development Disorder, or PDD, at exactly 6 1/2 years of age). I found it very difficult to explain to him the vague and various and seemingly not connected symptoms I was having, including the rash I've had on and off since I was a preschooler (I'm now 48) and was always treated as eczema (went into remission for many years during 80's and 90's when I actually supplemented my diet with various cold-pressed vegetable oils). He was aware that I had been experiencing flare-ups of the rash but the ointment he had prescribed for it was not helping. I took a deep breath and said something along the line of "I'm afraid you'll think I'm silly for this, but I'd like to be tested for celiac disease." He did say that people with celiac disease usually have trouble gaining weight, which is the opposite of me over the past several years, though with my first pregnancy in 1990 I had much difficulty gaining weight and had always weighed between 85 and 95 from the ages of 12 up to about age 37 (aside from the pregnancy) when I began to gradually put on some weight, but I put the bulk of it on since 2000 (weigh around 125-130 now, which I think is too much for my 5'1" frame). Actually, it wouldn't be so bad if it weren't for this basketball of a stomach I carry around with me (not "fat" anywhere else).

Other possible symptoms I've been experiencing are achy joints that "crack," muscle aches and pains, and dull headaches that seem to last for days (I do often get those during tax season since I work as a tax preparer, but that's not going on right now). Now, some might not see this as being a problem, but I also miss being able to drink even wine without having a burning sensation from practically my throat all the way through my entire digestive tract. I used to be able to drink practically anything without any digestive system problems. I've neglected to get my eyes checked since sometime in the mid to late 80's (very bad of me, but my insurance won't cover it and there never seems to be enough $$ left over for it), but I really want to since my eyes have been very dry for at least 10 years (as a matter of fact, I can remember the last time I cried, which was in January of 1994!) and burn and feel gritty much of the time (yeah, could be all this excessive computer use!) -- I've been suspecting of Sjogren's Syndrome for even longer, though I don't seem to have problems with my mouth being dry.

OK, just going a little crazy here waiting for results. My doctor indicated that the bloodwork would be conclusive and that a scope would not be necessary, though I'm afraid he might be misinformed on that point. In any case, if the results are positive, then I know what I must do diet-wise and how much work and stick-to-it-tiveness that will require, and if negative, then where do I go next? I'm considering going gluten-free in any case and possibly trying the same with my son since there is some research that suggests that a gluten-free diet can be beneficial for some autistics, though for different reasons (along with going casein free -- and we have been avoiding dairy products for years with my son since ingesting them seems to give him severe constipation). If my testing turns out to be positive, I'm considering convincing my husband to be tested based on many GI symptoms he has been suffering from.

I have never yet tried going gluten-free (for more than a few days, anyway, and that would be accidental) but do know that I feel much worse when I eat certain wheat containing foods, especially Shredded Wheat with Bran (for one thing, I feel like I can sleep for the entire rest of the day when I have that, but a breakfast of something like scrambled eggs leaves me feeling much more energetic). I did try a lower carb, higher protein diet some months ago and actually lost several inches around my waist and abdomen while on it (while losing only a couple of pounds) -- I just couldn't stick with it because my carb cravings were so severe and I really don't enjoy very many high-protein foods. This was the "Curves" diet, if anyone is familiar with that, and was done with support of a group with weekly meetings -- someone there said I was probably addicted to carbs and suffering from withdrawal, and I don't doubt it!

Will post later once I know. I feel like I can't really get on with the rest of my life until I know. I'm really sorry at how long this got. Thanks for reading if you made it this far -- it really helped to get some of this written down, even if only "on screen."

--Debbie

[VegasCeliacBuckeye]

Debbie,

Welcome aboard. You will find great insight and advice on this board regrading celiac disease and being gluten-free.

I noticed this quote you said, "He did say that people with celiac disease usually have trouble gaining weight, which is the opposite of me over the past several years".....

Well, tell your Dr. that celiac disease has MANY symptoms. Sometimes it is inability to gain weight, sometimes it is weight gain, sometimes it is bloating/gas (well, usually all of the time -- just ask the majority of us

Hopefully, the tests will be definitive for you, but beware of false positves and false negatives. celiac disease is a strange beast -- it likes to hide and have completely different symptoms and test results in every person -- makes it tough to diagnose...

Anyway, fire away with any other questions you have. We openly discuss symptoms, food, restaurants, raising kids, publications, poop (and its related disorders) and of course, doctors...

[FaithInScienceToo]

Hi, Debbie,

Welcome, and thanks for sharing SO much about your health history and why you suspect celiac disease in yourself.

I find it WONDERFUL that your doc thinks the blood tests alone will be suffificient...that he would not 'make' you do an endoscopy.

Still, I have seen posters on here who say they have had 'negative blood work, positive biopsy'... although I believe it is rare...

So, I do hope that your tests will be 'true' - no matter which way they come out, and that you find your answers through those alone -

Life is good, but it is incredible when you are healthy...

May you find yourself on your way back to good health,

Gina

PS - I have seen 'food cravings' listed as a symptom of celiac disease, and there was a recent research study showing that a significant number of diagnosed Celiacs are OVER-weight (I believe the number may have been 22% in that study of biopsy-confirmed Celiacs...you may want to Google for it, and print it out for your doc, to inform him...)